No Celebrating Here

On January 13 a post entitled Brick Walls at Wolfhirschhorn.org caused a media frenzy. I wrote about this as did many others devoted to disability rights. The story puzzled me from its inception. Organ transplants are rationed and people die waiting for organs. I knew that disability bias exists when deciding who does and does not get a transplant. I accept this as a given. I assume if I ever needed a transplant I would be denied based on the mere fact I am paralyzed. Yet people seemed shocked when a CHOP denied a cognitively disabled child an kidney. The denial was based on her quality of life and cognitive ability. In my estimation, the only thing that was different about the Rivera case was how blunt the doctors were with the parents. The subsequent uproar and firestorm across disability related blogs is a sign of just how fast news can travel. Thus the Rivera case differs in one key way from Sandra Jensen circa 1995. A supposed resolution with the hospital has quickly been reached.

My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:

"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can�t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story�they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".

No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.

Love the Irony

I have never met Penny Richards but admire her posts at Disability Studies, Temple University blog. When I got into the blogging world the Temple University blog was one of the first I read. I still read it regularly years later. I particularly like the historical entries--figures in disability history I never heard of. The Temple blog does not comment enough on contemporary issues. However when someone such as Richards does write I take note. And I just read the below. I absolutely love it! Commenting on the transplant controversy that has so many people upset Richards wrote:

"So let me get this straight...
If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?
BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?
Got it."

Not many outside the world of disability get it. The transplant team did not get it. Growth attenuation doctors in Seattle did not get it. Secondary schools do not get it. Businesses do not get it. Universities do not get it. But some of us do get it. And let me tell you those of us who get are not liked. We are considered uppity. I have been told repeatedly that I do not have a chip on my shoulder but a boulder. Good. When I am considered equal to those that walk rather than use a wheelchair said boulder will vanish. How dare I expect to be treated equally! How dare I expect to travel without a never ending hassle. How dare I expect the lift on a bus to work. How dare I expect to be employed. And now I can add how dare I receive a transplant.

Quick update....

A quick progress update ahead of what's going to be a really busy week for the project.

The Powering the World exhibition has been signed off and the panels will be printed this week. It will be launched at Friday's workshop. It's hard to judge until I see them full size, but on paper they look great and I hope they promote the collections well. 

The pilot employability project has finished, with both students engaging with the business archives material and producing really interesting web-guides.  Both gave positive feedback on their experience, and particularly their change of opinion on business archives as 'dry' and 'daunting' to a source they would both happily use again. A full report to come in the next few weeks!

Finally, Friday is the day of the workshop �The Bottom Line:  The Value of Business Archives for Research� at Swansea University. The delegates will be made up of students, academics and heritage professionals. I'm really pleased to see that we have undergraduate and postgraduate students from a variety of disciplines, including Arts and Humanities, Business and Economics, Engineering and Bio-sciences. 

We have some excellent speakers on the day, showing the quality, and variety, of research that can come from business records.

�         Dr Quentin Outram, Senior Lecturer in Economics, Leeds University Business School: 

�A Real Victory: The First of its kind since 1926': Employer archives on the Emlyn Strike of 1934'

He is the co-author (with Roy Church) of Strikes and Solidarity: Coalfield Conflict in Britain 1889-1966 (Cambridge University Press, 1998) and �Class Warriors: The Coalowners� in Industrial Politics and the 1926 Lockout: The Struggle for Dignity (University of Wales Press, 2004) edited by John McIlroy, Alan Campbell and Keith Gildart. 

�         Dr Tehmina Goskar: Research officer on the ESRC-funded Global and Local Worlds of Welsh Copper Project (until Sep 2011)

�Putting Humpty together again: Reconstructing supply chain information from copper business archives'

See here for more information on this project which brought together academics, the heritage sector and local and global communities to tell the story of Welsh copper 

�         Richard Haines, PHD student at Swansea University:

�An Embarrassment of Riches: Approaches to the Quantitative Analysis of British Shipping� 

Received an AHRC Collaborative Doctoral Award to work in conjunction with Swansea University and the National Waterfront Museum. His research has examined Swansea�s shipowning community during the nineteenth century, focusing on issues such as investment in shipping, the crewing of vessels, and shipowners� role in the social and urban development of the town.

For more information, or to register, please see here